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Saturday, November 6, 2010

WARWICK, R.I. — “They’ve been telling me since age 3 that I would die,” Tom Cosgrove (pictured) said quietly. “Then age 6, age 8, age 10.”

Now 20, he is considered the longest-living person born with H.I.V. in his state, but every year has brought struggle.

As a toddler at a shelter for children infected with H.I.V. from birth, he watched others die. Then, AIDS killed his mother and newborn brother. At 8, his body rejected medication and he became temporarily unable to walk.

He raged with anger, once even striking a teacher with a chair. Classmates, paranoid about his disease, refused to shake his hand or sit at his lunch table. Friends’ parents forbade them to visit, and he could not join basketball teams or karate classes.

Even now, medications impair his short-term memory, making school, and job prospects, difficult.

“We call them his stupid drugs,” said Barbara Cosgrove, who adopted Tom at 3. “But, as I say to Tom, ‘You’re either stupid or you’re dead.’ ”

At a time when H.I.V. in the United States has become a manageable disease for many, Tom Cosgrove and others like him are proof of the epidemic’s troubling, lingering legacy. They are the survivors, born beginning in the 1990s to the first big wave of people with AIDS, babies practically destined to die. Improvements in drugs, along with some luck, allowed some 10,000 of them to live — and these days only about 200 children a year are born with H.I.V., thanks to vigilant drug treatment of infected pregnant women.

But life for those first H.I.V. babies now entering adolescence and adulthood has been a battle, and their experience is considered so significant — not only in this country but also for the millions of H.I.V.-positive babies worldwide — that federal health agencies have begun an extensive study to follow these young people as they grow up.

Some are weakened by years of yo-yoing symptoms that early drugs failed to treat. Some have developmental delays or other problems related to having H.I.V. at birth. And their medications often have harsher side effects than those taken by people infected more recently as teenagers or adults because complications from their illness, or previous drugs they took and became resistant to, have made their disease more stubborn to treat.

Emotionally, they grapple with hostility toward parents who infected them, grief that those parents suffered and usually died, and anxiety about trusting others with a secret that still provokes hazing and fear.

And a serious problem is emerging: some are rebelling or asserting independence by skipping or stopping medication, which can make H.I.V. spiral out of control and become impervious to previously effective therapies.

“It ain’t over yet,” Dr. Ellen Cooper, medical director of pediatric and adolescent H.I.V. at Boston Medical Center, said about keeping these young people alive and healthy. Although she has not lost a patient in five years, she said, “I’m expecting a second wave” of these young people “dying because they’re not adherent” to medication, or because of “complications from treatment.”

Dr. Lynne M. Mofenson, chief of pediatric, adolescent and maternal AIDS at the National Institute of Child Health and Human Development, said that despite H.I.V. babies’ increased survival, their “mortality is still thirtyfold higher than similarly aged children,” and there is “a lot of research that’s needed, and interventions to improve their lives.”

Preliminary findings show many of their current lifesaving drugs cause high cholesterol, raising fears of serious heart problems, said Dr. Russell Van Dyke, the study’s co-principal investigator. Their bone density appears poor. And many have mental health and behavioral problems, although it is unclear to what degree those problems are related to the disease or to the children’s often-difficult family circumstances.

“There is a lot of concern,” Dr. Van Dyke said, “about how the kids adapt to living and what sort of challenges they have. The lessons are going to be applicable to the rest of the world.”

‘I Was Born This Way’

Davi Morales is the kind of young person doctors worry about. He has H.I.V.-related cognitive disabilities, and spent months homeless after uncles who raised him in a Providence, R.I., housing project returned to Puerto Rico.

Davi, 20, lost Social Security disability assistance because the government now considers most H.I.V.-infected people able to work, said Scott Mitchel, a counselor with AIDS Care Ocean State, who got him into an apartment that his agency owns. But Davi has trouble staying employed, following rules, working with managers.

“I don’t think right now he can go out there and support himself,” Mr. Mitchel said. For one thing, his medication, five pills twice daily, causes severe insomnia and diarrhea.

Nowadays, people contracting H.I.V. through sex or drugs may take one easily tolerated pill, but the H.I.V.-baby generation often needs complex multipill doses with irritating side effects, making pill-skipping more likely.

In desperation, doctors sometimes allow them to stop medication altogether rather than take their “last rescue regimen poorly,” Dr. Cooper said.

Davi sometimes skips several days, and “when I feel down, like I just want to give up, I don’t want to take my medicine at all,” he said. “If I didn’t have that kid, I probably never would take them.”

That kid is the son born three years ago after Davi, who was 16, told his girlfriend at the time, who was 14, “I want to have a kid” and “she was cool with it,” he said. “I didn’t really know what I was really doing.”

She took medication during pregnancy, and their son is uninfected. Her family, fearful of Davi’s disease, blocked access to the boy for awhile, and the couple broke up. He is facing assault charges for striking her during an argument, but now sees his son regularly.

He said he wants to stay alive, but “maybe my lifespan is not as long as a normal lifespan. I was born this way and that’s what it is.”

Medication is not the problem for Elizabeth. Eighteen, white, from a wealthy Massachusetts suburb, she has been ostracized and tormented, “ ‘H.I.V. slut’ being yelled across the hallway, anything you can think of,” she said.

Elizabeth did not know she had H.I.V. until the age of 14, when her parents and physician appeared at her therapist’s appointment and told her.

“I couldn’t speak or really breathe,” said Elizabeth, whose mother was infected through a blood transfusion before she was born.

Elizabeth, who asked that her last name be withheld, said her mother “wants me to be completely closed about it,” and even Elizabeth’s little sister, who is uninfected, does not know. Keeping it inside feels “like holding your breath underwater for too long.”

But close friends she confided in betrayed her. Her best friend gossiped about it, and a boyfriend she broke up with “told everyone to get back at me,” she said. Schoolwork suffered as she constantly feared hazing and “focused on having to deal with this.”

At 16, she told a new boyfriend, who “promised that he’d never judge me upon it, that he’d never break up with me, that he’d never tell anyone,” she said. “The next day he broke up with me because of it.” They reunited, but his parents scorned her and he sometimes hid their relationship from friends, said Elizabeth, who recently stopped seeing him.

She said people in her well-educated community, who should know that H.I.V. can be well controlled with medication and protected against with condoms, have been surprisingly intolerant.

“There’s no need to think I’m dirty,” she said. “I’ve basically had my trust for people completely taken away.”

Sharing and Trusting

Things get harder as H.I.V. babies grow up and leave the “very nurturing network” of pediatric AIDS clinics and programs, said Rena Greifinger, who formed the One Love Project to help such young people. “At 18, all that support melts away,” plus some of them “have been completely rejected by their families, the leper child.”

At a weeklong retreat at Babson College in Wellesley, Mass., One Love provided music therapy, role-playing about disclosing H.I.V. status, and explicit discussions about sex and having children.

“When I was pregnant, I was crying all the time, worried she would be positive,” said Imani Walters, 19, who contracted H.I.V. as a teenager. Her daughter turned out healthy. “Then you get scared you might not see them grow up.”

The young people were told that having infected children was unlikely with medication through pregnancy, avoiding breastfeeding and giving the babies medication for six weeks.

“We wanted to give them so much information that we get that buy-in to stay on their meds, and they learn how to live with H.I.V.,” said Bill Kubicek, executive director of Next Step, which sponsors One Love and was co-founded by Paul Newman.

Elizabeth met other H.I.V. babies for the first time at the conference, and “here I trust everyone,” she said.

The gathering was eye-opening for Sandy Perez, 18, from Canaan, N.H., too. Her mother, infected through drug use, died when Sandy was 7. Some foster families mistreated her, she said; at one home, underfed, she slept in the laundry room, locked in, and would climb out the window and re-enter the house through the garage to grab food.

Although she now has a loving family and takes medication regularly, she has experienced serious symptoms: sunken cheeks, gaunt face, bony arms. Medication has caused diabetes, and liver and kidney problems.

Sandy rarely disclosed her H.I.V., not even to boyfriends, although she always used condoms. But she said the conference “inspired me” to feel “comfortable with myself and with having this H.I.V., so I can now share it with people that I feel I trust.”

Like her boyfriend of two years, with whom she had not had intercourse. Unable to reach him by phone from the conference, she texted him: “I have H.I.V.” He texted back: “Are you serious?” She replied: “Yes.”

Sandy felt relieved. If he did not know and “became infected, then there would be a part of me that felt responsible and guilty and just icky inside,” she said.

Soon after, the relationship ended, on good terms, she said. “He kind of didn’t really know how to handle it,” she said. But “he calmed down and we eventually talked” and “he was happy I had told him before we did anything.”

A Family’s Acceptance

When the Cosgroves adopted Tom, he was unruly and angry, and at 5 was further traumatized by seeing his mother “turning different colors, losing her hair,” dying of AIDS, he said. He pasted her obituary on his First Communion banner, and had “nightmares, night sweats,” he said, “very mad at her because I thought she purposefully gave me this disease.”

Since “people were petrified to take any of these children,” Ms. Cosgrove said, she adopted four other “throwaway babies,” saying she was abused as a child and “kind of a throwaway baby myself.”

All four, who arrived untested for H.I.V., turned out negative. “I really felt alone,” Tom said, and at 9, after an H.I.V.-camp friend died, he begged them to adopt someone like him.

They adopted Tyree, who had two H.I.V. strains, one from each parent, and developmental delays. For years, he took medication through a stomach tube because he would vomit it otherwise. Now 11, he often needs leg braces, and his viral load — the amount of virus in the blood — is too high.

Tyree’s adoption did not improve everything for Tom, and Tom was “very out of control” for years, he said. To tame his behavior, Ms. Cosgrove said, she had to “push him down and say, ‘You are not going to talk like that, you are not going to act like that.’ One day I dragged him across the carpet, and his teacher called and I told her this is what I did and why.”

By 12, Tom had calmed down, but he chafed at people’s reactions. Ms. Cosgrove informed his school about his H.I.V. and held a meeting for parents, but while school officials were supportive, some parents and classmates shunned him. Tyree attends another school, whose principal advised against disclosure because parents would react badly. And a soccer coach Ms. Cosgrove told said, “Oh, we’re not taking kids like that.”

Tyree said he feels “lonely” because “none of my friends come over.” He already knows how to protect others, saying, “Don’t have sex with me.”

Tom, now mature and thoughtful, finds things more complicated. With his infection well suppressed with medication, he has started Job Corps, a federal job-training program, but his medications’ side effects affecting his memory concern him, and he said that girlfriends have not lasted long because “people have a lot of worries about going out with someone with this disease.”

Still, since his adoptive family “can accept me for who I am,” he said, “I look at it as if there’s other people out there who can probably do the same.”

About Me

I am full-time Mass Communication faculty at Towson University in Maryland and adjunct faculty in the City University of New York (CUNY) Master's in Disability Studies program.
I research media and disability issues and wrote a 2010 book on the subject: Representing Disability in an Ableist World: Essays on Mass Media, published by Advocado Press.
The media have real power to define what the public knows about disability and that's what I research.